01 April 2015
Norman was born a hemophiliac without the blood factor needed to cause clotting. By age nine, he had been hospitalized more times than most people are in a lifetime.
His story briefly is recounted in Abraham Verghese’s 1994 memoir My Own Country. I first read it shortly after I came out. Recently my husband Dave and I read it aloud together. We’re going to serve as panelists at a presentation featuring the book.
Verghese writes from the perspective of an outsider. Born in Africa to parents from India, he obtained his medical degree then came to the United States, where he specialized in infectious diseases. About the same time, HIV/AIDS began to show itself across the nation. Verghese writes about his five years practicing medicine in Johnson City, Tennessee.
He introduces us to the patients he serves. He describes the community's reaction to them, to him and to the spread of the pandemic. Norman is one of his patients.
Repeated intra-joint bleeding from hemophilia has left Norman with a limp, deformed his body and stunted his growth. Growing up, he had to sit on the sidelines and watch as other boys his age played contact sports.
Now an adult, he learns he has contracted HIV through a blood infusion.
“All I ever had, Doc, was courage and dignity,” he tells Verghese. “That was my thing. Am I going to lose it to this disease?”
Verghese can’t promise him he won’t.
Ah, Norman. I hear these traits in your words. Courage and dignity shine in your willingness to ask the question. You face a grim reality. Often, those with almost nothing are called upon to relinquish even the little they have. Your story lodges in my heart.
“It is in the small things we see it,” writes the poet Anne Sexton. (She herself suffered mental illness and died in 1974 at her own hand.) She titles her poem “Courage.” She might have been writing of you, Norman. Sexton says courage shows up in the young child’s early actions: first step, first time riding a bike, first spanking. Such events loom large in the child’s world and elicit an outsized response.
When they called you crybaby
Or poor or fatty or crazy
And made you into an alien,
You drank their acid
And concealed it.
We LGBT adults can relate who as children grew up aliens in our own homes, schools, churches, communities. For Sexton, courage lies in taking life one step at a time, meeting what comes, doing what you can, even if that involves drinking poison.
Norman, you knew hardship and alienation all your life. You dove down deep into your own inner resources. You drew on courage and dignity to make it through. You wore them as shield and buckler. Now even these may desert you: “Will I lose them, doc?”
Jonathan Larson echoes your plaintive cry in the Broadway musical _Rent._ In an HIV support group meeting one person after another stands and sings, "Will I lose my dignity? Will someone care?”
I don’t know what your final days were like, Norman. I don’t know what mine will be. I can only hope I have the courage to face death with as much dignity as I hear in your words.
Here’s Sexton again. She predicts you’ll show your courage in determination, fierce love, resistance, hanging on as long as you can,
And at the last moment
When death opens the back door
You’ll put on your carpet slippers
And stride out.
You’ve been dead 30 years, Norman, but your courage and dignity live on. You’ve left some some mighty big slippers to fill.